Monday, March 31, 2008

Purpose: To assist Nova Scotians with a disability in their pursuit of post-secondary studies.

Awards - Eight scholarships in the amount of $1,000.00 each are available for the academic year beginning September 2008.

Conditions To be considered, scholarship candidates must:· Be a person with a permanent disability. 'Permanent Disability' means a limitation that restricts the ability of a person to perform the activities necessary to participate in educational activities or in the labour force within the range considered normal. This limitation is expected to remain with the person for life.· Be a permanent resident of Nova Scotia· Be entering or continuing studies in a Canadian post-secondary institution that is recognized by the Association of Universities and Colleges of Canada· Not be involved in the selection process or be a close family member of any scholarship selection committee member.

Criteria The applications of candidates meeting the above considerations will be forwarded to the selection committee. Applications are weighed on a number of factors including:· Community involvement· Extra-curricular activities· Reaction to obstacles· Academic performance· Educational goals and direction

The devil is always in the details and in this case, the details include what information parents are given if a problem is discovered. And even whether such testing is really ethical at all. What, exactly, are we trying to accomplish asks Susan Sherwin, philosophy professor at Dalhousie University.

"These tests are tests not to cure any condition; these tests are aimed at actually avoiding the condition by avoiding the birth of people with the condition in question. Medicine’s solution to Down syndrome is ‘let’s stop the person from being born.’ This is a very unusual public policy.”

The statistics point to over 90 per cent of pregnancies diagnosed with Down syndrome being terminated. The President and co-founder of the Nova Scotia Down's Syndrome Society poses an interesting question ... just what exactly are parents whose pre-natal screening show that their child will have Down's Syndrome, for example, being told? And perhaps more importantly, what aren't they being told?

Technological advances in fetal screening are presenting parents -and doctors-with enormous ethical, psychological and social dilemmas. Vulnerable, and with limited or biased information as guidance, more than 90% of prospective parents in Canada choose termination if their baby is diagnosed prenatal with Down syndrome. They may never know there is a world of resources, hope and support out there. In spite of tireless efforts from support groups their information pamphlets rarely reach prospective parents at the time they need it most.

In other countries legislation has been passed or is being debated [Update: and apparently has now been passed] which ensures prospective parents are supplied with balanced information about the diagnosed condition and educational programs for health care providers are established. Although Canada has seen a huge increase in prenatal screening and testing, with most provinces, including Nova Scotia, now funding such procedures, we have not seen similar legislation passed in any province.

In November of 2007, a panel discussion, organized by the Nova Scotia Down's Syndrome Society, was held on this issue. Think about it, the difference between being told that your baby will be born with Down's Syndrome, followed by a virtual shopping list of possible mental, physical and behavioural complications and a possible solution, terminating the pregnancy. Or being given your child's diagnosis along with balanced information as to what that actually means and what services are out there for you, your family and your infant.

It's interesting to note that the Nova Scotia Down Syndrome Society has experienced a sharp reduction (of about 85%) in registrations of new families during 2007. What is the value of our children's lives, be they diagnosed with Down's Syndrome or some other condition? Is it too much to ask for our medical professionals to ensure that balanced, non-directive information is provided to parents at the time they are given such potentially life-shattering news?

Renate is a good writer; she writes as one who has been there, as a parent of two daughters with Down's Syndrome; from the heart and also speaks from a place of knowledge (as President of the Nova Scotia Down's Syndrome Society). Read some more of what she has to say.

Meanwhile she offers this for us to ponder.

Just to back up the 'Welcome to Canada' poem with hard facts is this article, Jan 2008 published in the Int. Journal of Pediatrics. Prevalence of DS in the Netherlands is 16 in 10,000 births, this is an increase of about 50% since 20 years ago.

Compare that to NS, where in 2007, to my knowledge about 3 babies with DS were born in a total of 8,500 births. Yet officials maintain that counselling to women is non-directive.

You can find the Petition here. I urge you to seriously consider this issue. And then add your name to the voices demanding change. Demanding fairness for all our children, no matter their diagnosis.

Thursday, March 20, 2008

Jean Nicol, a [former?] resource teacher in the Chignecto-Central Regional School Board (who apparently has a degree in nutrition and has spent 25 years working with autistic children) has has created a meal-planning tool to help autistic children overcome fussy eating habits.

It's called The Eating Game (Get Awesome Meals Everyday).

Many children with autism will fixate on a few types of food and refuse to eat anything else, Nicol explained in an interview with CBC News, a tendency that frustrates and worries parents who want their children to eat healthy meals. So starting with a child who would only eat two types of food, Ms. Nicol began by putting pictures of food from Canada's Food Guide in a three-ring binder, and then letting him choose his snacks and meals from the pictures. After he had done so, he would place the picture of his chosen food on a grid on the family fridge.

This meal-planning system turned into The Eating Game, with children choosing their foods and putting the velcro-backed pictures on a colour-coded guide to ensure they're meeting food guide recommendations. The method is based on Nicol's theory that it's not the food's taste or texture that makes autistic children fussy, but a need for routine. That and the fact that it gives these kids some of the control they feel they are lacking in their environment.

And that first child, Ethan, who led to the start of this program? His mom, Shirley Hillier, said the improvement in her son has been "huge" and she gives a lot of the credit for Ethan gaining weight to The Eating Game.

"He liked hot dogs and rice, and he would have eaten that breakfast, dinner, supper and snack," she said, explaining that now "I'd say he's eating over a hundred new foods."

Ethan agreed, adding, "I like all the foods in the whole wide world," citing his latest favourites as macaroni and garlic fingers.

The first edition of the book went on sale in November and it seems quite popular. Since then Ms. Nicol has launched her own business, EyeCan Creations, and contracted out the manufacturing to Sackville, N.S.-based Anchor Industries, where 40 mentally challenged employees cut out and assemble the books.

The second edition sells for $50 and features pictures of food drawn by a local artist.

Although this post is by no means a personal recommendation, I have been provided with a copy of the order form. So if you think you might be interested, leave a comment or drop me an email (using the Profile link) and I will send you a copy.

As part of our ongoing efforts to engage financial institutions and the disability community in an active dialogue, the Office for Disability Issues is inviting you to participate in a half-day consultation session on proposed draft CanadaDisability Savings Regulations.

Budget 2007 acted on the recommendations of the Expert Panel on Financial Security for Children with Severe Disabilities by announcing the introduction of a new Registered Disability Savings Plan (RDSP), a tax-assisted vehicle for long term savings that can receive contributions from the Government of Canada in addition to contributions by individuals and organizations. Government contributions will consist of a Canada Disability Savings Grant (CDSG) and a Canada Disability Savings Bond (CDSB).

Once adopted, the Canada Disability Savings Regulations will complete the legal framework established by the Income Tax Act and the Canada Disability Savings Act and outline the Terms and Conditions that must be included in agreements with Issuers that will offer RDSP and the information that those RDSP Issuers must collect on behalf of the Government of Canada.

The consultation meeting will provide a forum to discuss the proposed draft Regulations (attached for your review), and answer questions on the proposed draft RT405.ithmbT405.ithmbegulations.

Ottawa, ON on April 39:00 am to 12:00 pmPlace Vanier, room 12B023355 North River Road, Ottawa, ON

Please confirm your attendance or that of your designate by sending an e-mail to the Canada Disability Savings Program electronic mailbox at cdsp-pcei@hrsdc-rhdsc.gc.ca by March 25, 2008. Please ensure that we have complete information of the person attending, including name, title and contact information, and any accessibility requirements, as well as the session date and time.

Should you have any questions or comments, or if you would prefer to provide your feedback in writing, please do not hesitate to contact Susannah Hill at 613-941-2610 or cdsp-pcei@hrsdc-rhdsc.gc.ca. Please provide written comments by April 11, 2008.

We look forward to a productive meeting. Your views are important and we hope, through these consultations, to further strengthen this new initiative as an effective vehicle in improving the financial security of people with severe and prolonged disabilities.

Tuesday, March 18, 2008

While this won't do you any good for your 2006 taxes, I've just learned that there is a new federal tax credit for a Children's Fitness Amount for 2007, with a special little bonus attached for children with disabilities.

You can claim to a maximum of $500 per child, the fees paid in 2007 that relate to the cost of registering your or your spouse or common-law partner’s child in a prescribed program of physical activity. The child must have been under 16 years of age at the beginning of the year.

And it appears that, unlike the Nova Scotia tax credit, the organization does not have to be registered or approved by government in order for you to claim the fees. It's only necessary that the activity meet the relevant definition.

But what's this special bonus for children with disabilities, you ask?

Children with disabilities – If the child qualifies for the disability amount and is under 18 years of age at the beginning of the year, an additional amount of $500 can be claimed provided that a minimum of $100 is paid on registration or membership fees for a prescribed program of physical activity.

That's right, Virginia, there is a Santa Claus ... if you're eligible for the maximum amount of the tax credit ($500), you can claim double that amount if your child qualifies for the disability tax credit. And even if you're not eligible for the full amount ($500), you can still claim an additional $500 credit provided your child qualifies for the disability tax credit and you spent $100 on fees for a prescribed program of physical activity.

And note that while the regular tax credit is only available for children under the age of 16 years, the extra credit for children with disabilities is available to children under the age of 18 years.

Monday, March 17, 2008

Feeling just a little guilty for not yet having posted the promised information on the prenatal screening campaign. But unfortunately life is short with only so many hours in the day. And numerous other responsibilities beckon.

However, never fear, I haven't forgotten ... I plan to get back to this topic over the Easter weekend. So please hang in and keep checking back.

Monday, March 10, 2008

It's not about pro-abortionIt's not about pro-lifeIts about pro-humanity

These are the words of Renate Lindeman, mother of April and Hazel (both have Down syndrome) and president and co-founder of the Nova Scotia Down Syndrome Society. Sounds like a busy, ambitious lady, doesn't she? She's also a woman with a mission.

I am going to be telling you more about Renate's mission, a mission she shares with many others in the disability community, and why that mission is so important over the next little while. But first I would like to share with you a poem Renate wrote. It an be found on her blog, Campaign for Down Syndrome.

I am seldom asked to describe the experience of raising children with a disability in Canada – to try to reach people who avoid this issue, to get them involved. It’s like this….

When we landed as Dutch immigrants at Halifax Airport six years ago, we were excited to start the first day of our lives in our newly adopted country. We found jobs, a home, made ‘Canadian’ friends and got involved in our community. Canada felt like the perfect place to live.

After years of successful integration, the day finally arrives that our own little Canadian was born. Several hours later, the nurse comes in and says, ‘your baby has Down syndrome, welcome to Canada.'

‘Canada?!?’ you say ‘what do you mean welcome to Canada’? We live here, our baby is born here, of course we are welcome here.

Go read the rest of it. It will bring a tear to your eye. And might just make you question what you think you know. We'll talk later.

Thursday, March 6, 2008

"People need a better way to access hope and support through a system that doesn’t need to be re-created but only needs to be connected."

That's Catherine Woodman, president and CEO of United Way Halifax Region, speaking about the need for a 211 service in this Province.

So tell me, how do you feel about automated telephone answering systems? What about the labyrinth of voice mail from hell when you are trying to access or locate a particular government service? How would you like to try to access those same services if you were new to the province or had a disability?

Might you be interested in something that could short-circuit that process? Might you be interested in a service like 211?

211 is personal telephone access to information about the full range of social services offered in a local community. It is especially valuable to seniors, newcomers and persons with disabilities trying to navigate the maze of services delivered by multiple levels of government and private providers.

Today residents in large cities like Toronto, Edmonton and Calgary, as well as smaller cities such as Windsor, Niagara Falls and Simcoe have access to 211, 24-7. Callers always talk to people and never a machine. Three more 211 initiatives will launch in 2008 in Ottawa, Thunder Bay and Quebec City. The premier of British Columbia has recently announced the commitment to the first provincewide 211 service in the throne speech.

Apparently the United Way has been advancing the project in Nova Scotia since 2004. They have now been joined by 181 other social and health organizations across the province, including community health boards, regional libraries, family resource centres, food banks, seniors’ centres, churches and fire departments.

Certainly, Lisa Elliott understands. Two years ago, Lisa’s life was turned upside down when both her parents developed major health problems at the same time. Among other services, they needed help with meals, housework, getting to appointments and snow shovelling.

Finding help was just as stressful as providing the help herself. Lisa began spending her evenings, weekends and lunch hours making phone calls and searching the Internet for the support she needed. "I felt very alone, very helpless." Lisa says. "I was so completely burnt out that I was physically exhausted. I ended up sick for an entire winter because my immune system was so compromised. I wish there had been a 211 service and I could have called to discuss my situation and found out what I could do. I had no idea where to turn."

Can you identify with those sentiments? Would you be surprised to learn that a recent poll revealed that 86per cent of Nova Scotians support a 211 system and 66 per cent stated they would use it?

Sunday, March 2, 2008

Although not all 'advocates for the disabled' are necessarily on the same page on this one and, for example, my personal feelings are much more conflicted on this matter, I am passing along some info for your consideration.

Hi - we have word that tomorrow's [Ed. Monday, March 3, 2008] CBC cross country check up with Rex Murphy will focus on Latimer - so encourage all to listen and phone in if you can. As we discussed on our Board call earlier this week, our key messages are:

- the National Parole Board Appeals Division decision brings to a close this chapter in the story about Tracy Latimer

- We regret that Mr. Latimer has not expressed remorse or apparent understanding about his actions, because we believe this would have sent a message to the public that would help counter the view of many Canadians that he was justified in his actions

- We think it's time to turn to the larger story here - the apparent moral consensus among the media and many in the broader public that Robert Latimer's murder of his daughter was justified by her condition. That consensus will be more and more problematic as we face a future of a growing proportion of Canadians living with signficant and pain-related disabilities... 1.8 million (a number and proportion that is growing) of working age Canadians live with pain related disabilities - and over 70% of those (or 1.3 million Canadians age 15-64) indicate they experience pain constantly (thanks Cam for pulling these numbers together from the December 2007 release from Statistics Canada).

- We think the real lesson from the Tracy Latimer case is not, as many suggest, that we need to renew the debate about mercy killing. Because this was not euthanasia or mercy killing - Tracy was not dying. Her pain could have been relieved with more effective pain management medication if her parents had allowed a feeding tube to be inserted. They refused, which is why the pain management was so ineffective and the stories circulate that she could only take Tylenol... No, the real story is why Canadians with disabilities are so vulnerable to violence and abuse, to not getting the supports they need.

- Given the continued vulnerability Canadians with signficant disabilities face in our communities, the threat and experience of violence faced, we think it is time for a National inquiry into the status and vulnerability of people with disabilities in Canadian communities. This is one way that Canadians can come face to face with the realities, the voices, the lives of people with disabilities. To frame the Tracy Latimer issue as one of mercy killing, is to miss the core issue her life and death repesent - that of vulnerability to violence and abuse...

- Some have suggested that there is really something wrong with our justice system if Karla Homolka and other who have done horrific crimes get less time than Robert Latimer. If we are challenged on that point, one response might be that... if we think that is a problem maybe we should be looking at why others are getting out so early, and off so early... How the justice system dealt with Karla Homolka and others may not be the standard we want to hold ourselves to.

- So let's see if we can use this opportunity to get our message out, and to make a call for a National inquiry into the status of Canadians with disabilities a call that starts to 'stick'.

- Am hoping you can get a message out to your networks, and that PT Presidents and Executive Directors can circulate to our local membership news of the show and encouragement to call in...

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